Today I went to my new PM folks. They are simply wonderful.
As I've written before, I see a Physician's Assistant (PA) and a Pharmacist together each time we meet, and they ask me pointed questions which, in the end, make a world of sense to me. Nina and Eric are their names. Good folks.
I am now taking Oxycontin with oxycodone for breakthrough pain, along with nortriptyline at night for sleep (and controls the pain during the night). I also take 90 mg of Cymbalta.
I had a rough two weeks since the last time I'd seen them. I had a good visit with my mother (from NH) and my sister (from Hawaii), and then a very close friend from Maine came to visit, along with her husband.
I would have been okay and recovered from that, but I did a "number" on myself when someone locally wanted to trade his property for ours. I love where his property lies, in a pine forest with no lawn or flowerbeds to care for, only pine needles. Just what I need.
The yard here is too much for me to take care of. My husband mows the lawn, but I try to take care of the watering and light weeding. I love gardening, but it's truly too much for me. When I try to do some weeding, I lie down next to the flower bed and pull weeds that way sometimes.
So, I think having a yard in the middle of some pines would be just what I needed. That any energy or strength I might have could be used for some easy walking. And that's another thing, we don't have any easy walking here. The road is too busy, and it has no shoulder to walk on. And across the road is a great place to hike, as it leads down into a canyon and back up the other side, but all of that is beyond what I can do now.
Back to the other day and how it affected my pain level.
I weeded in the yard one whole day and I did housework for one day as I prepared the place to be seen by a potential "trader." The one night, I was up at 9:30 pm weeding!
My hands swelled up and were so weak and painful!
As it turned out, though the other guy did want to trade, we did not. We loved the land at his place but the house was a triple-wide manufactured home and that was simply too big for me to take care, vac the carpets, etc.
As I looked back, though, on the days I spent preparing to show our place, I realized that I was obsessed and was having a serious lack of good judgment when I worked so hard. The pain is still with me, though it lessens each day, as I pay the fiddler for overdoing.
I asked my husband to strongly tell me to stop working so hard if I ever go into that mode again. He said I've worked that way all of my life, which is true. But "no can do" anymore!
So, the pharmacist today decided that we should keep on with my meds and dosages the way they are for now, because it is hard to measure their failure or success when the last two weeks were not the "norm" for me. I thought that made good sense.
I began to cry big ol' juicy tears at the end of our session, just because they are so nice. So caring. I am so labile any more. I cry at anything, almost. And especially when I am around people who are sincerely kind to me.
Thursday, July 1, 2010
Wednesday, June 30, 2010
Long time, no write
Okay, this has been terrible....soooooo long since I've written. Now, I have a good reason. My hands have gotten really bad, painful and weak. But, I will just write some short updates and that way, for those who follow here, if you are still around, you get updated.
The results of the sleep study were that I have Central Sleep Apnea. I knew I did, but this was the first official diagnosis of it because the other sleep study I had done, the techs were very inefficient and the sleep clinic closed down two weeks after I was there, so I never got a true analysis.
From the Mayo Clinic website:
Central sleep apnea is a disorder in which your breathing repeatedly stops and starts during sleep due to lack of respiratory effort. Unlike obstructive sleep apnea, in which you can't breathe normally because of upper airway obstruction, central sleep apnea occurs when your brain doesn't send proper signals to the muscles that control your breathing. Central sleep apnea is less common, accounting for less than 5 percent of sleep apneas.
Central sleep apnea occurs when your brain fails to transmit signals to your breathing muscles. Central sleep apnea can be caused by a number of conditions that affect the ability of your brainstem — which links your brain to your spinal cord and controls many functions such as heart rate and breathing — to control your breathing.
The doctor offered me the CPAP machine, said what I have warranted it. But also said if I didn't want it, he wasn't going to push it on me. I didn't want it!
The results of the sleep study were that I have Central Sleep Apnea. I knew I did, but this was the first official diagnosis of it because the other sleep study I had done, the techs were very inefficient and the sleep clinic closed down two weeks after I was there, so I never got a true analysis.
From the Mayo Clinic website:
Central sleep apnea is a disorder in which your breathing repeatedly stops and starts during sleep due to lack of respiratory effort. Unlike obstructive sleep apnea, in which you can't breathe normally because of upper airway obstruction, central sleep apnea occurs when your brain doesn't send proper signals to the muscles that control your breathing. Central sleep apnea is less common, accounting for less than 5 percent of sleep apneas.
Central sleep apnea occurs when your brain fails to transmit signals to your breathing muscles. Central sleep apnea can be caused by a number of conditions that affect the ability of your brainstem — which links your brain to your spinal cord and controls many functions such as heart rate and breathing — to control your breathing.
The doctor offered me the CPAP machine, said what I have warranted it. But also said if I didn't want it, he wasn't going to push it on me. I didn't want it!
Thursday, May 6, 2010
Quick notes
I have written down a few notes of things I want to publish here, but never seem to get around to doing. So, here are a few of them in random order, for whatever they are worth.
It was while I was sitting in the waiting room awaiting my consult with my new NSG that I read in a neurological magazine about tau. I will not try to explain anything about tau here, but I trust the reader will do so for him/herself if they are intrigued.
I read that the presence of tau in the cerebral spinal fluid (CSF) indicates traumatic brain damage.
This can be relevant for the patient who has suffered a concussion or brain injury, yet the MRIs are not showing any (or enough) lesions to impress the doctors. If you are up for a lumbar puncture and if the doctor would okay this test, and if tau is found, it can be the evidence you need.
But, keep in mind that LPs for many people are a risk, especially if you have arachnoiditis or Chiari Malformation. Check with your doctor.
**************************************************
I have stumbled upon the best home-vacuum for someone who has weight-lifting restrictions. The name of the vac is LiNK cordless by Hoover. It comes with a lithium battery, and has suction that outperforms any other vacuum I have tried. The battery lasts long enough to do a full room or two, so it's not for someone who is professionally housecleaning. However, for those of us with disabilities, we should probably be resting between rooms as we vacuum anyway. If you are like me, I vacuum one room, then leave the vac waiting in the next room until I have the energy or "spoons" ( http://tinyurl.com/ybn8a6z ) to do more, which means the vacuum sits in that room for two weeks or a month!
This vacuum doesn't use bags so you don't have to purchase those. It has a plastic cone that creates a tornado of suction that fills the clear plastic cup quickly of debris and dirt, pet hair, etc, from your carpet or rugs. You don't have to touch the stuff to dump it into the trash either, you just hold it over the trash can and press a button and the contents spill out into the trash. I love it!
No cord to mess with so you don't have to bend over to plug into outlets. The appliance is relatively light in weight. I think it'd make a great gift for an elderly loved one, or someone who is disabled. The cost, I believe, was about $130-150 retail.
********************************************
A blog reader and e-friend sent me a great book, titled The Bear's Embrace; A story of survival written by the late Patricia Van Tighem.
Do you know of someone who has experienced a "near-death" experience? Or perhaps you have, yourself? Look for this book on the internet. It has been re-printed many times with various covers, I noticed. It's a fascinating read especially for someone who has suffered Post Traumatic Stress Disorder.
As Ms Van Tighem wrote and described her symptoms after the vicious attack by a grizzly bear while she and her husband hiked in Canada, I knew before she related the tales of the eventual diagnosis by her doctors that the author was suffering from PTSD.
This is a tragic tale, especially if you find out (as I did, later, when I looked up the author on the web) that eventually, Ms. Van Tighem committed suicide due to her condition 7 years, I believe, after the bear attack.
This is a great book for family and friends who believe that once a person has gone a certain time after his or her "near death" event, they should pick themselves up by their bootstraps and move on. They should "get over it!" This book emotionally and graphically tells the tale of our struggles with the mind.
If you are the PTSD-sufferer, then this book will put into words your story.
And, if nothing else, it's simply a great read!
Thanks, Lisa!
*********************************************
Also related to this topic is a thought I had and wrote on my list of things to add to this blog.
The thought came to me, after reading the above book, of the fact that when cougars, big cats of all kinds, bears and wolves go "for the kill," they most often go for the skull base area. The back of the head.
I have so often felt and oft-mentioned to people that I believe that region to be the center of all life in the body. Injuries there can and do affect every part of the body and all systems. (Often, less-than-knowledgeable doctors will say that injuries in that area cannot cause symptoms in the lower extremities, but they are wrong. My new NSG ... or I should say "ex-new-NSG" said the same thing to me...and he is wrong. I have read medical articles that state if someone has injuries high enough up in the Cspine, they will cause "below the waist" symptoms...and I know it from my own experience.)
The wild predators of this world know where the source of life is within the bodies of their prey. And we can take that to the bank.
*****************************************
Another note I made while sitting in the waiting room for my NSG (he was four hours late for my appt that time due to an emergency surgery) came from reading another short piece in Neurology Now, I believe.
It spoke to those of us with skull base issues (ie Chiari Malformation or someone with cranial settling, cranio-cervical instability, retroflexed odontoid, basilar invagination, traumatic injuries to the area) stating the importance of not-trying to get the last sip from a bottle or soda can.
Lifting your head up and back is exactly what you should not do if you have skull base issues.
Rather, use a straw to get that last sip, or forego the delectable pleasure of stealing that last, delicious sip!
********************************************
When I got my dog, Mickey, I was driven north to a town 80 miles away for an appointment with an orthotist, to get my new (at the time) CTO (cervical thoracic orthotic) (or "big honkin' brace"). I asked before I went (who drove patients to doctor appointments for the county) if it would be possible for me to carry home a rescue-dog that the shelter volunteer would bring to the doctor's parking lot.
I was told that it was against policy for the driver to take a patient anywhere except to the actual doctor appointment, and that pets were not allow. However if it was to be a service-dog, then it would be allowed.
The kind lady on the phone (ours being a small and scarcely-populated county) told me, "I'm sure that new dog qualifies as a service dog in some way! Yes, we can do it!"
I've had that dog for two years now and he's been such a blessing to me. Heck yes, he's my service dog! He follows me everywhere I go, from room to room. I simply cannot go from a room without him at my heels, even two years after we picked him up.
I blogged about this when I first got him, but to refresh, this dog had been left in an orchard after the fruit pickers had moved on. When found, he had a scar almost all the way around his neck/throat. Most likely, someone had neglected to exchange a too-small collar for a larger one as the dog began to grow too big for the puppy-sized one. That's my guess, anyway. He has a white-hair line around his throat to remind me, but I doubt he remembers. He's the most forgiving and loving dog I've ever had.
Mickey is a standard-sized Dachshund, and people who see him often remark they've never seen one like him. Most people think of Dachshunds as the miniatures most often seen these days. Mickey weighs 35 lbs. and is black and tan in color. I think he's the most handsome thing going!
When I lie down for my naps each day, Mickey is instantly at my side. He crawls under the covers and stretches out and places his warm body all along my back or side. This is so comforting, I can't describe it! Often, my pain is centered at the small of my back, where I had the tethered cord surgery, and Mickey seems to instinctively know that.
Yes, he's my service dog. He's smart enough he'd do anything I might have the energy and strength to train him to do. That, however, is the rub! But what he knows and shows that comes straight from his loyal heart is "just what the doctor ordered!"
It was while I was sitting in the waiting room awaiting my consult with my new NSG that I read in a neurological magazine about tau. I will not try to explain anything about tau here, but I trust the reader will do so for him/herself if they are intrigued.
I read that the presence of tau in the cerebral spinal fluid (CSF) indicates traumatic brain damage.
This can be relevant for the patient who has suffered a concussion or brain injury, yet the MRIs are not showing any (or enough) lesions to impress the doctors. If you are up for a lumbar puncture and if the doctor would okay this test, and if tau is found, it can be the evidence you need.
But, keep in mind that LPs for many people are a risk, especially if you have arachnoiditis or Chiari Malformation. Check with your doctor.
**************************************************
I have stumbled upon the best home-vacuum for someone who has weight-lifting restrictions. The name of the vac is LiNK cordless by Hoover. It comes with a lithium battery, and has suction that outperforms any other vacuum I have tried. The battery lasts long enough to do a full room or two, so it's not for someone who is professionally housecleaning. However, for those of us with disabilities, we should probably be resting between rooms as we vacuum anyway. If you are like me, I vacuum one room, then leave the vac waiting in the next room until I have the energy or "spoons" ( http://tinyurl.com/ybn8a6z ) to do more, which means the vacuum sits in that room for two weeks or a month!
This vacuum doesn't use bags so you don't have to purchase those. It has a plastic cone that creates a tornado of suction that fills the clear plastic cup quickly of debris and dirt, pet hair, etc, from your carpet or rugs. You don't have to touch the stuff to dump it into the trash either, you just hold it over the trash can and press a button and the contents spill out into the trash. I love it!
No cord to mess with so you don't have to bend over to plug into outlets. The appliance is relatively light in weight. I think it'd make a great gift for an elderly loved one, or someone who is disabled. The cost, I believe, was about $130-150 retail.
********************************************
A blog reader and e-friend sent me a great book, titled The Bear's Embrace; A story of survival written by the late Patricia Van Tighem.
Do you know of someone who has experienced a "near-death" experience? Or perhaps you have, yourself? Look for this book on the internet. It has been re-printed many times with various covers, I noticed. It's a fascinating read especially for someone who has suffered Post Traumatic Stress Disorder.
As Ms Van Tighem wrote and described her symptoms after the vicious attack by a grizzly bear while she and her husband hiked in Canada, I knew before she related the tales of the eventual diagnosis by her doctors that the author was suffering from PTSD.
This is a tragic tale, especially if you find out (as I did, later, when I looked up the author on the web) that eventually, Ms. Van Tighem committed suicide due to her condition 7 years, I believe, after the bear attack.
This is a great book for family and friends who believe that once a person has gone a certain time after his or her "near death" event, they should pick themselves up by their bootstraps and move on. They should "get over it!" This book emotionally and graphically tells the tale of our struggles with the mind.
If you are the PTSD-sufferer, then this book will put into words your story.
And, if nothing else, it's simply a great read!
Thanks, Lisa!
*********************************************
Also related to this topic is a thought I had and wrote on my list of things to add to this blog.
The thought came to me, after reading the above book, of the fact that when cougars, big cats of all kinds, bears and wolves go "for the kill," they most often go for the skull base area. The back of the head.
I have so often felt and oft-mentioned to people that I believe that region to be the center of all life in the body. Injuries there can and do affect every part of the body and all systems. (Often, less-than-knowledgeable doctors will say that injuries in that area cannot cause symptoms in the lower extremities, but they are wrong. My new NSG ... or I should say "ex-new-NSG" said the same thing to me...and he is wrong. I have read medical articles that state if someone has injuries high enough up in the Cspine, they will cause "below the waist" symptoms...and I know it from my own experience.)
The wild predators of this world know where the source of life is within the bodies of their prey. And we can take that to the bank.
*****************************************
Another note I made while sitting in the waiting room for my NSG (he was four hours late for my appt that time due to an emergency surgery) came from reading another short piece in Neurology Now, I believe.
It spoke to those of us with skull base issues (ie Chiari Malformation or someone with cranial settling, cranio-cervical instability, retroflexed odontoid, basilar invagination, traumatic injuries to the area) stating the importance of not-trying to get the last sip from a bottle or soda can.
Lifting your head up and back is exactly what you should not do if you have skull base issues.
Rather, use a straw to get that last sip, or forego the delectable pleasure of stealing that last, delicious sip!
********************************************
When I got my dog, Mickey, I was driven north to a town 80 miles away for an appointment with an orthotist, to get my new (at the time) CTO (cervical thoracic orthotic) (or "big honkin' brace"). I asked before I went (who drove patients to doctor appointments for the county) if it would be possible for me to carry home a rescue-dog that the shelter volunteer would bring to the doctor's parking lot.
I was told that it was against policy for the driver to take a patient anywhere except to the actual doctor appointment, and that pets were not allow. However if it was to be a service-dog, then it would be allowed.
The kind lady on the phone (ours being a small and scarcely-populated county) told me, "I'm sure that new dog qualifies as a service dog in some way! Yes, we can do it!"
I've had that dog for two years now and he's been such a blessing to me. Heck yes, he's my service dog! He follows me everywhere I go, from room to room. I simply cannot go from a room without him at my heels, even two years after we picked him up.
I blogged about this when I first got him, but to refresh, this dog had been left in an orchard after the fruit pickers had moved on. When found, he had a scar almost all the way around his neck/throat. Most likely, someone had neglected to exchange a too-small collar for a larger one as the dog began to grow too big for the puppy-sized one. That's my guess, anyway. He has a white-hair line around his throat to remind me, but I doubt he remembers. He's the most forgiving and loving dog I've ever had.
Mickey is a standard-sized Dachshund, and people who see him often remark they've never seen one like him. Most people think of Dachshunds as the miniatures most often seen these days. Mickey weighs 35 lbs. and is black and tan in color. I think he's the most handsome thing going!
When I lie down for my naps each day, Mickey is instantly at my side. He crawls under the covers and stretches out and places his warm body all along my back or side. This is so comforting, I can't describe it! Often, my pain is centered at the small of my back, where I had the tethered cord surgery, and Mickey seems to instinctively know that.
Yes, he's my service dog. He's smart enough he'd do anything I might have the energy and strength to train him to do. That, however, is the rub! But what he knows and shows that comes straight from his loyal heart is "just what the doctor ordered!"
random updates
I need to get updates on here, but being at the computer has become more and more painful.
So, I will just copy/paste a note in here that I just rushed off to my sister. It won't be very prettily-written, but it is an update of sorts.
**************************************
Being on the computer just seems so much harder than it used to. My husband has suggested a laptop, too...but I think looking down at the screen and typing with arms moving will be hard no matter where I'm at. But in the future, that might be something I'd like to look into.
I thought that the atty was talking like he'd get me anything to make my life better, after they found me 100% disabled, but I sent in a scooter proposal and have heard nothing yet. I wished I had had one when we went to the car show in town a couple of Saturdays ago!
Let's see...I went for the sleep study a week ago, last Thurs night. The tech gal told me I do have apnea, both central and obstructive. I go back to talk to the sleep doctor when I get back from AK.
I was surprised to hear them say I do have apnea since these tests always seem to show up with nothing. I guess that proves the brainstem compression that [the new NSG] denies I have. And Dr. Shelat in NY showed us very clearly on the MRIs...
Friday, [my husband] picked me up early at the hospital and we went home and I think I went right to bed.
I think the weekend was uneventful, I can't remember any of it now.
Monday, both [my husband] and I went to our primary to get new RX for our pain meds since we'll be getting back after the RX runs out.
We went to town yesterday to fill the RX, and met with opposition because we were told it was too early to fill it, insurance wouldn't allow it. We went to our reg. pharmacy and they were willing to fill one. So it goes.
It was sooooo windy and stormy all weekend and then yesterday too, big black storm clouds all across the plains and occasional squalls we drove thru.
The hills are lovely and green and covered with flowers!!
So, I will just copy/paste a note in here that I just rushed off to my sister. It won't be very prettily-written, but it is an update of sorts.
**************************************
Being on the computer just seems so much harder than it used to. My husband has suggested a laptop, too...but I think looking down at the screen and typing with arms moving will be hard no matter where I'm at. But in the future, that might be something I'd like to look into.
I thought that the atty was talking like he'd get me anything to make my life better, after they found me 100% disabled, but I sent in a scooter proposal and have heard nothing yet. I wished I had had one when we went to the car show in town a couple of Saturdays ago!
Let's see...I went for the sleep study a week ago, last Thurs night. The tech gal told me I do have apnea, both central and obstructive. I go back to talk to the sleep doctor when I get back from AK.
I was surprised to hear them say I do have apnea since these tests always seem to show up with nothing. I guess that proves the brainstem compression that [the new NSG] denies I have. And Dr. Shelat in NY showed us very clearly on the MRIs...
Friday, [my husband] picked me up early at the hospital and we went home and I think I went right to bed.
I think the weekend was uneventful, I can't remember any of it now.
Monday, both [my husband] and I went to our primary to get new RX for our pain meds since we'll be getting back after the RX runs out.
We went to town yesterday to fill the RX, and met with opposition because we were told it was too early to fill it, insurance wouldn't allow it. We went to our reg. pharmacy and they were willing to fill one. So it goes.
It was sooooo windy and stormy all weekend and then yesterday too, big black storm clouds all across the plains and occasional squalls we drove thru.
The hills are lovely and green and covered with flowers!!
Friday, April 23, 2010
"Thinking in Pictures"
I picked up a book in the lending library on the neurosurgical floor at OHSU. The title is "Thinking in Pictures: and other reports from my life with autism," by Temple Grandin.
Those who have children with autism are probably familiar with this author and perhaps this book. If not, then I highly recommend it, but the author is so well-known, it's hard for me to believe that parents of autistic children are not aware of her work.
She is also well-known to livestock producers, and hence, to me. I became aware of this remarkable woman at least 20 years ago as my husband and I started on a journey of enlightenment on the topic of cattle handling.
Ms. Grandin is a heroine in so many senses, but especially so since she turned what might have been perceived as a curse (autism) into a blessing. Her way of looking at things and experiencing life has given her insight into the way animals see the world. With this knowledge, instinctual and profound, Ms. Grandin began to investigate the way cattle were being handled through steel alleys, corrals and chutes. I won't go into the theories of her radical ideas here, but will mention that over the span of time and decades, her changes to livestock facilities have proven to work and result in much less-stressed cattle. Her curved alleys, sweep tubs and squeeze chutes have less impact on the cattle and cause less frustration and labor for the handlers. In the cases of slaughter facilities, less stress and impact on the cattle means a better product, and most of all, a more humane way of doing things.
However, having said all of that, I'm writing about this book in this blog for a different reason.
As I began to read about Ms. Grandin's life, due to my interest in handling livestock, I became aware that so much of what she was describing of challenges for those who are autistic seem to relate, at various levels, to my own struggles with traumatic brain injury. I have not finished reading the book, and already I plan to read it again as soon as I am through. I have marked a few places that really speak to me, and which I want to chronicle here.
As we all know, when someone writes and describes something that we are dealing with yet lacks the words and skill to describe, it is a wide-eyed discovery. I feel as though I have found something that truly applies to me, that someone is speaking my language. I definitely feel less alone.
Could it be that certain, acquired brain-injury defects actually resemble the congenital defects found in the brains of those whose challenges lie found on the autistic spectrum? I've never thought of it before, but why not?
Ms. Grandin suggests as much in her quote from page 137 the book:
According to Antonio Damasio, people who suddenly lose emotions because of strokes often make disastrous financial and social decisions. These patients have completely normal thoughts, and they respond normally when asked about hypothetical social situations. But their performance plummets when they have to make rapid decisions without emotional cues. It must be like suddenly becoming autistic.
I have made many notes from Thinking in Pictures and hope to make a follow-up post soon here to reflect upon the many similarities between various, high-functioning levels of autism and Mild Traumatic Brain Injury.
Those who have children with autism are probably familiar with this author and perhaps this book. If not, then I highly recommend it, but the author is so well-known, it's hard for me to believe that parents of autistic children are not aware of her work.
She is also well-known to livestock producers, and hence, to me. I became aware of this remarkable woman at least 20 years ago as my husband and I started on a journey of enlightenment on the topic of cattle handling.
Ms. Grandin is a heroine in so many senses, but especially so since she turned what might have been perceived as a curse (autism) into a blessing. Her way of looking at things and experiencing life has given her insight into the way animals see the world. With this knowledge, instinctual and profound, Ms. Grandin began to investigate the way cattle were being handled through steel alleys, corrals and chutes. I won't go into the theories of her radical ideas here, but will mention that over the span of time and decades, her changes to livestock facilities have proven to work and result in much less-stressed cattle. Her curved alleys, sweep tubs and squeeze chutes have less impact on the cattle and cause less frustration and labor for the handlers. In the cases of slaughter facilities, less stress and impact on the cattle means a better product, and most of all, a more humane way of doing things.
However, having said all of that, I'm writing about this book in this blog for a different reason.
As I began to read about Ms. Grandin's life, due to my interest in handling livestock, I became aware that so much of what she was describing of challenges for those who are autistic seem to relate, at various levels, to my own struggles with traumatic brain injury. I have not finished reading the book, and already I plan to read it again as soon as I am through. I have marked a few places that really speak to me, and which I want to chronicle here.
As we all know, when someone writes and describes something that we are dealing with yet lacks the words and skill to describe, it is a wide-eyed discovery. I feel as though I have found something that truly applies to me, that someone is speaking my language. I definitely feel less alone.
Could it be that certain, acquired brain-injury defects actually resemble the congenital defects found in the brains of those whose challenges lie found on the autistic spectrum? I've never thought of it before, but why not?
Ms. Grandin suggests as much in her quote from page 137 the book:
According to Antonio Damasio, people who suddenly lose emotions because of strokes often make disastrous financial and social decisions. These patients have completely normal thoughts, and they respond normally when asked about hypothetical social situations. But their performance plummets when they have to make rapid decisions without emotional cues. It must be like suddenly becoming autistic.
I have made many notes from Thinking in Pictures and hope to make a follow-up post soon here to reflect upon the many similarities between various, high-functioning levels of autism and Mild Traumatic Brain Injury.
Tuesday, April 13, 2010
Update since my NSG appointment yesterday
As you know, the last time I went to Portland, OR (OHSU), the neurosurgeon (NSG) surprised me by saying I needed to have screws put in place to hold my head more solid on my spine, that he was advising me to do this, that it has been six years and no one has done anything to help me and I need to go ahead and get this done. (this was surprising to me because I have not had anything happen for me, surgically, to correct the problems of my non-union breaks in the C1, and because this surgeon had told me on my first visit to him that there was no way he'd perform surgery on me).
I felt very positive about surgery and life in general since he said that. On March 22, I had a new CT scan of my C-spine done at OHSU, so I went back yesterday to hear if they had found anything new on the CT, and to ask a few questions about surgery, and then I planned to tell him to schedule me for surgery.
Why this happens to me, I just don't know. But yesterday, the NSG was very different. He was nice enough, but he spent a lot of time (and kept coming back to it) telling me that there is a risk I could die from the surgery or I could have a stroke and be paralyzed, or I could go through it all and come out worse than I started. I don't know if he felt, in retrospect, that he had previously been too encouraging about the surgery or what. But this time, he was the opposite. And he seemed kind of ignorant of the whole thing.
So, I ended up not feeling as confident with him as I had been before, and he instilled a lot of doubt in me from telling me over and over all of his caveats. "I DO make mistakes sometimes," he even said!
Obviously, I didn't schedule surgery!
He mentioned that I should have an injection at the back of the head to see if that alleviates any pain back there. That would indicate what the surgery might do for me, he said. I had been wary of having any epidural shots due to my arachnoiditis, but he said these shots are into the muscles and nerves only, not in the spinal canal. So, I am thinking I might try these injections. Maybe they will be successful and the way I should go.
As he panned over the mid-sagittal image of my entire Cspine, I saw something that looked out of place. He was panning quickly, as the imaging program allows. As he panned past that place again, I noticed it again. When he, for the third time, panned past it, I called attention to it.
With pen pointing to the questionable area in the CT, I asked, "I know this is the odontoid, this is the anterior of the C1 and this is the clivus, but what is this bone? I've never seen that there before?"
He replied, "Oh, that is bone that is not supposed to be there. It is probably something grown by your body to try to stabilize your skull."
Indeed, it did look like chinking, a pretty big piece of bone lying in the "V" between the front of the C1 and the front of the skull (clivus). I asked my NSG if that could be causing any problems and he said no, "There are no nerves in that area." I am wondering now if this blob of bone could be affecting my swallowing perhaps, as an actual obstruction (instead of brainstem compression).
I also noticed how much closer the tip of the clivus (part of skull in front of the foramen magnum or "hole" in the skull that allows the nerves and spinal cord to run down from the brain through the vertebrae of the spine) is to the tip of the odontoid.
The odontoid is the front piece of the C2, around which the C1 rests and it all acts as a joint/cog that allows the head and neck rotation we are used to. It looks like a big finger sticking up and it is supposed to be quite a few millimeters away from the clivus/front of skull. I have been watching this with interest over these last years, whenever I get new imaging done, because as that space narrows, it indicates cranial settling, ie that the cranium/skull is settling down onto the C2/odontoid. I have watched as that space narrows on me. No doctor is as interested as I am, and quite frankly, they don't like it when you point things out to them anyway. THEY have hundreds of patients to think about and recall their imaging. I only have MINE. And I know it very well.
I did ask my NSG yesterday about that space narrowing and without any deliberance, he stated simply, "You did not break the C2." I knew that. But I am also very familiar with some of the signs of settling, which does not have to have anything to do with a C2 break.
oh well....insert long, drawn-out sigh here...
All in all, I have lost faith in this doctor. I liked how congenial he was, but that is not enough. And I didn't like how he started to rush me out after 15 minutes, which he has done the other two times I've seen him. How can I figure these things out and help my NSG to do so, when he only wants to spend 15 minutes with me? Such as my questions about the new blob of bone that is "not supposed to be there?" A blob of bone that he did not see and I was able to point out to him?
So, I'm sort of in limbo-land about that right now. I had built up a lot of hopes about surgery (again!) but I guess I've learned not to invest too much until the deal is sealed!
What a turn about, huh? anyway, I wanted to let you know, and I'll keep you posted. Thanks for caring and for your prayers. I'm doing just fine, it's just another jog in the road and I'm used to that!!
I felt very positive about surgery and life in general since he said that. On March 22, I had a new CT scan of my C-spine done at OHSU, so I went back yesterday to hear if they had found anything new on the CT, and to ask a few questions about surgery, and then I planned to tell him to schedule me for surgery.
Why this happens to me, I just don't know. But yesterday, the NSG was very different. He was nice enough, but he spent a lot of time (and kept coming back to it) telling me that there is a risk I could die from the surgery or I could have a stroke and be paralyzed, or I could go through it all and come out worse than I started. I don't know if he felt, in retrospect, that he had previously been too encouraging about the surgery or what. But this time, he was the opposite. And he seemed kind of ignorant of the whole thing.
So, I ended up not feeling as confident with him as I had been before, and he instilled a lot of doubt in me from telling me over and over all of his caveats. "I DO make mistakes sometimes," he even said!
Obviously, I didn't schedule surgery!
He mentioned that I should have an injection at the back of the head to see if that alleviates any pain back there. That would indicate what the surgery might do for me, he said. I had been wary of having any epidural shots due to my arachnoiditis, but he said these shots are into the muscles and nerves only, not in the spinal canal. So, I am thinking I might try these injections. Maybe they will be successful and the way I should go.
As he panned over the mid-sagittal image of my entire Cspine, I saw something that looked out of place. He was panning quickly, as the imaging program allows. As he panned past that place again, I noticed it again. When he, for the third time, panned past it, I called attention to it.
With pen pointing to the questionable area in the CT, I asked, "I know this is the odontoid, this is the anterior of the C1 and this is the clivus, but what is this bone? I've never seen that there before?"
He replied, "Oh, that is bone that is not supposed to be there. It is probably something grown by your body to try to stabilize your skull."
Indeed, it did look like chinking, a pretty big piece of bone lying in the "V" between the front of the C1 and the front of the skull (clivus). I asked my NSG if that could be causing any problems and he said no, "There are no nerves in that area." I am wondering now if this blob of bone could be affecting my swallowing perhaps, as an actual obstruction (instead of brainstem compression).
I also noticed how much closer the tip of the clivus (part of skull in front of the foramen magnum or "hole" in the skull that allows the nerves and spinal cord to run down from the brain through the vertebrae of the spine) is to the tip of the odontoid.
The odontoid is the front piece of the C2, around which the C1 rests and it all acts as a joint/cog that allows the head and neck rotation we are used to. It looks like a big finger sticking up and it is supposed to be quite a few millimeters away from the clivus/front of skull. I have been watching this with interest over these last years, whenever I get new imaging done, because as that space narrows, it indicates cranial settling, ie that the cranium/skull is settling down onto the C2/odontoid. I have watched as that space narrows on me. No doctor is as interested as I am, and quite frankly, they don't like it when you point things out to them anyway. THEY have hundreds of patients to think about and recall their imaging. I only have MINE. And I know it very well.
I did ask my NSG yesterday about that space narrowing and without any deliberance, he stated simply, "You did not break the C2." I knew that. But I am also very familiar with some of the signs of settling, which does not have to have anything to do with a C2 break.
oh well....insert long, drawn-out sigh here...
All in all, I have lost faith in this doctor. I liked how congenial he was, but that is not enough. And I didn't like how he started to rush me out after 15 minutes, which he has done the other two times I've seen him. How can I figure these things out and help my NSG to do so, when he only wants to spend 15 minutes with me? Such as my questions about the new blob of bone that is "not supposed to be there?" A blob of bone that he did not see and I was able to point out to him?
So, I'm sort of in limbo-land about that right now. I had built up a lot of hopes about surgery (again!) but I guess I've learned not to invest too much until the deal is sealed!
What a turn about, huh? anyway, I wanted to let you know, and I'll keep you posted. Thanks for caring and for your prayers. I'm doing just fine, it's just another jog in the road and I'm used to that!!
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